Monday, April 5, 2010

Jonah is about the same health wise. I took him back to the doctor today, and Dr. B said that he has the beginnings of an ear infection (caused by his virus, apparently). We gave him his first dose of Amoxicillin this afternoon. He has lost almost a pound a half since Wednesday. If you have been following this blog for any amount of time, you know how hard we work for each and every ounce and how we have fought so hard to avoid a g-tube. You know the loss of those 21 ounces is KILLING me. He's barely eating any formula whatsoever, but does allow a few ounces of Pedialyte here and there. He probably had five ounces of formula today and about eight ounces of Pedialyte.Thank God for Pedialyte!He is sometimes having a wet diaper every six hours. Sometimes not. We are fighting tooth and nail to keep him hydrated. It is very draining, frustrating, and frightening. If we can't keep him adequately hydrated, he will have to go to the hospital for IV fluids. IV's are never a great option with EB kids, although often inevitable. Dr. B wants to check his weight again on Friday.Please, please pray for Jonah - that he will begin eating again, will stay hydrated, and will begin gaining back the weight he's lost. I'm praying that this antibiotic will be our miracle.I know it's just a virus and an ear infection, so many of you may not understand why it's such a big deal, but dehydration and malnutrition are the top reasons (next to infection) that EB kids get into serious trouble.I'd be lying if I said it doesn't scare the sh*t out of me. Eat, baby, EAT!

29 comments:

Praying for sweet Jonah to start eating and gaining weight. Colds can be scary to any mom, but especially scary for you. I can see where you are coming from with not wanting him to go the hospital for hydration. I cannot begin to understand how scary EB is with getting an IV or coughing or being sick. Praying for you and peace tonight.

N. had the worst diaper rash in his life this morning, and my first thought was "This is just a small shadow of what Jonah, Patrice and Matt live with EVERY DAY." I'm so sorry Jonah is not feeling well and will definitely keep praying for him to eat, eat, eat! (And drink up, too!) Praying for you, too.

We're praying fervently for Jonah to be healed quickly! Hopefully the antibiotic will kick-start him into feeling better. I can't imagine how frustrated/scared/worried you are - will pray for you to have complete peace as you take care of him.

...I really wish we could come up with an invention to heal this rotten EB!!

Praying for sweet Jonah! I can only imagine your fear! I am glad you are honest with us!

Sweet Jesus, please allow Jonah to be hungry and eat without pain. Please help his little body to be hydrated and nourished! And that he will gain his weight back. Please comfort Patrice and Matt. In Jesus Name, Amen!

Patrice, I can only understand a tiny bit your struggles with getting food and fluids into Jonah, but I pretty much am begging God to help you give Jonah the best life possible. I know you do your best; I'm asking God to sustain you, encourage you, give you wisdom, and bless all of you!

Praying for sweet Jonah. Also wanted to mention that my kids hated Pedialyte but loved Gatorade. Maybe he would drink more of it. Just a suggestion. Praying the antibiotic works quickly, and he begins eating again.